Black and Blue Ribbons
— Karen Del Vecchio

invisible

An avid equestrian and educator based in Virginia, Karen Del Vecchio was diagnosed with Ehlers-Danlos syndrome in 2009 after years searching for a diagnosis that explained her symptoms. Since her diagnosis at the Johns Hopkins Connective Tissues Disorder Clinic, she has worked to find ways to manage her symptoms while still maintaining an active lifestyle. Karen enjoys working with her students, riding and caring for her two horses, Cherry and Spotty, and connecting with others in the rare disease community through her writing.

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My EDS pain seems to operate by different rules each day

One thing that’s particularly difficult about managing Ehlers-Danlos syndrome (EDS) is that the same activity can affect me differently on different days. I try to keep track of patterns or movements that are likely to cause a pain flare, but unfortunately, it doesn’t always work. Some days, I can…

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After experiments, I’m now feeling the benefits of a standing desk

Over the years, I’ve tried a variety of ways to make myself more comfortable at work, where I’m a teacher and college counselor. With my Ehlers-Danlos syndrome (EDS), too much time in any one position, whether sitting or standing, can cause discomfort. My workdays fluctuate between lots of time…

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A mysterious EDS pain flare-up surprises me yet again

Last week, I was surprised when building a ramp for my dog didn’t cause my pain to flare up. This week, I’m shocked because I’m in the middle of a pain flare, and I don’t know why! That’s pretty much the epitome of Ehlers-Danlos syndrome (EDS). It comes…

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When I expect an EDS flare-up, sometimes it doesn’t happen

Just when I think I know how my Ehlers-Danlos syndrome (EDS) will react in certain situations, I’m always surprised at what actually happens. My dog Pepper has recently been having trouble climbing stairs. She’s 13, and I’ve had her for two years. I knew that at some point she’d…

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A silly fall while clearing my shoes leads to an EDS pain flare

Do not fall out of a Kubota vehicle. You’re probably thinking, gee, that’s a pretty obvious statement. Yep, it sure is. And despite using four-wheel minitruck vehicles on farms for over a decade, I managed to take my first tumble off one recently. Despite only sliding a few…

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Getting sick is never fun — especially when living with EDS

The past few weeks have been a whirlwind. As a teacher, the end of winter always seems to drag, as cold, gray days and lots of sick kids make for a tough couple of months. I was pretty lucky this year, as I’d gotten only a mild cold back in…

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When an EDS diagnosis helps, even years after a soccer injury

My right shoulder has been causing me problems for more than 20 years, though I’ve made much progress. The original injury happened during a soccer game and has reverberated since then, often as either the cause or a participant in my Ehlers-Danlos syndrome (EDS) pain flares. I remember…

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With EDS, learning how to stay warm in the winter is crucial

The rising and falling temperatures we’ve been experiencing lately have been challenging for me. With Ehlers-Danlos syndrome (EDS), I already tend to have tight muscles that cause pain. It’s a constant battle, regardless of what month of the year it is or whether it’s hot or cold outside.

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For my EDS foot pain, small changes made a big difference

I’ve been fighting plantar fasciitis on and off for over a year. While I’ve tried to do some things to manage it, mostly I’ve just ignored it. That’s one of my frequent go-to, but not-so-great, coping mechanisms for physical pain. As a result, my foot pain worsened…

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The importance of routines in avoiding anxiety and managing EDS

I’m a creature of habit. I like my routines, and while I’m perfectly capable of altering them when I need to, I prefer rhythm and predictability in my day-to-day life. I moved a couple months ago, and while I still live in the same community with the same people (and…

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On painful EDS days, a little humor can be just what the doctor ordered

When painful Ehlers-Danlos syndrome (EDS) symptoms get me down, I like to imagine that my body’s sore spots have their own personalities. No, I’m not crazy; I don’t actually believe they have their own feelings. But it’s entertaining to pretend they do. I find that joking about it is…


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